Spectrum Tech, Trade School, Village, and Training Center

The Academic Consequences of Being an “In‑Betweener”

My son wasn’t just misunderstood socially — he was academically sidelined.

He didn’t speak when he was young, so schools assumed he couldn’t learn.
Then when he did start speaking, he wasn’t speaking at school due to nervous system dysregulation and the long‑term impact of compliance‑based intervention.
Instead of recognizing situational mutism, they labeled him “non‑responsive” and denied him access to academics.

Situational mutism is not “selective.”
It is not a choice.
It is a physiological freeze response, often triggered by stress, sensory overload, or environments that feel unsafe.
Research shows this clearly:

Autonomic dysregulation drives mutism, not refusal.

Autistic individuals often communicate differently depending on environmental safety.

Compliance‑based programs can increase stress, masking, and shutdown, reducing spontaneous communication.

During dysregulation, both speech and AAC can become inaccessible due to motor inhibition.

When speech is used as a proxy for intelligence, autistic students are routinely under‑placed academically.

Because he couldn’t answer on command, he was given preschool‑level work as a teenager.
AAC wasn’t always accessible either — dysregulation can shut down motor planning and initiation.

He is not behind because he couldn’t learn.
He is behind because he wasn’t allowed to learn.

Advocacy requires accuracy.
Communication is not compliance.
And every child deserves access to real academics.

Sometimes the clock runs out before we realize our silence cost us everything.

Time is almost up.

Speak now or lose the chance to shape history.

If you want to help shape the federal plan for autism research and services, this is the moment.

Autistic individuals, parents, caregivers, and providers — your lived experience is evidence. Your voice is data.

I read the 300‑page draft and submitted my comments because we cannot claim our voices were ignored if we never use them.

Silence has never fixed a failing system.

You don’t need to read every page. But you do need to speak your truth. Tell your story. Name the gaps. Name the harm. Share your experience with a system that has failed too many for too long.

Your perspective is not optional; it is essential.

This is the window to make history, to influence the federal blueprint that will shape autism research and services for years to come.

The biggest regrets often come from what we never say.

Regret grows in the space where our voices should have been.

There’s a whole group of autistic individuals who don’t fit the labels — not “low support needs,” not “profound autism.” They’re the in‑between kids, and my son is one of them.

When Stephen was 3½, we moved into our home and had to put baby gates at the top and bottom of the stairs because he lacked the motor coordination, strength, balance, and sequencing skills to navigate stairs safely — even while holding a banister. He slept in a crib until 4½ because he couldn’t safely climb in or out. At that time, he would have been labeled “profound,” even though that label never captured who he truly was.

He had no expressive speech — not unreliable speech, not echolalia, but no speech. His apraxia was so severe he couldn’t string sounds together. The sound “Ka” could mean cat, cucumber, or anything else. Vowels were nearly impossible.

But he was underestimated.

At age 9, the school system told me to “give up” on expressive speech. At age 11, he started speaking — because I didn’t give up.

Today, he loves language. He asks me things like, “What is excavator in Spanish?” He speaks spontaneously, answers questions, and keeps learning — but he still cannot hold a full conversation yet. He still needs intensive support for articulation, apraxia, motor planning, ARFID, executive functioning, and co‑occurring medical issues.

He cannot be left alone. I have full guardianship. He is not “low support needs.” He is not “profound.” He is an in‑betweener — and the system has no category for him.

So where does he fall? What services will he get? Where are the studies on in‑between autistic individuals? Why does the IACC plan ignore this entire population?

We need a national plan that addresses all levels of the spectrum, including the in‑between kids who are capable of incredible growth when given the right supports.

At Spectrum Tech Trade School, Village, and Training Center, we are building a model for supported independence, communication development, motor growth, regulation, and autonomy for in‑betweeners — because the current system doesn’t.

Families deserve options. Kids like Stephen deserve

The IACC Interagency Autism Coordinating Committee coordinates federal efforts on autism research and policy. Right now, their strategic plan is up for public comment. This is part 3 of my comments on where there can be improvements in the document based on my personal experience and my experience as a founder of a nonprofit that is revolutionizing autism programming and services.
Families are navigating unregulated therapy markets with no credentialing standards and no consumer protections.
What stops misinformation from spreading in unregulated therapy markets?
What prevents parents from being misled by unqualified “experts”?
What prevents financial devastation when protocols don’t work?
What happens when a biomedical doctor, misses a virulent strep infection, and is still listed publicly as a PANDAS “expert”?
Where is the oversight?
Where is the accountability?
Where is the regulation of therapeutic claims? ( I am not big on overly regulating processes but we need some protections here if this is going to be the recommendations going forward)
The draft plan recommends expanding therapies — but never addresses who is allowed to deliver them.
Families deserve protection, not guesswork.
I will post the completed commentary letter at the end of this series.

Part 2 of what I am including in my public comment to the IACC draft

While the IACC draft represents an important step forward, affordability remains a critical challenge for many families. I understand how difficult it is for families to access essential therapies when they face overwhelming out-of-pocket expenses. Many families, including mine, encounter these barriers every day, making it clear that research alone is not enough if families can’t afford the therapies it produces.

The current draft lacks insurance mandates, coverage requirements, and cost modeling, leaving families to shoulder the costs for the only therapies that help—sometimes amounting to hundreds of thousands of dollars. Access to care should not depend on a parent’s bank account; research without affordability is not access, but privilege.

For example, I have heard from therapists who have invested so much in their continuing education to specialize in sub-specialties that they joke, “My children better get scholarships because there is no way I’ll be able to pay for their college education.” (Now you know why many providers do not take insurance even when the therapy they provide such as OT, PT, or speech).

In my own experience, a GI doctor once quoted $20,000 out of pocket to scope my son, simply because they did not accept insurance. Another parent confided that a provider wanted to charge a $9,000 upfront contract fee, and the contract allowed the provider to keep the money even if the therapy was discontinued. Another parent spent $175,000 with a top provider, and her son was still non-speaking and in diapers at 9 years old. Families shouldn’t have to mortgage their house to get care for their child with little results.

These stories are not isolated—they reflect the reality for countless families striving to secure the best possible care for their children. Together, we can advocate for better access. I urge the IACC to address these gaps by including insurance mandates, coverage requirements, and robust cost modeling in the final draft, so all families can benefit from the advances in research.

Autistic nervous systems aren’t “overreactive” — they’re highly sensitive, highly responsive, and deeply influential in how a person learns, communicates, and feels safe. This is exactly why Spectrum Tech Trade School, Village, and Training Center programs begin with nervous system regulation as the foundation.

A regulated brain is a learning brain.

Research from UCLA Health shows autistic individuals display stronger neural responses in sensory-processing regions and the amygdala during sensory input.

These heightened responses explain why sounds feel louder, textures feel sharper, and stress hits faster.

Citation: Green et al., UCLA Health / Journal of Neuroscience, 2015 — autistic participants showed amplified activation in sensory cortices and the amygdala during sensory tasks.

Multiple studies confirm autistic individuals often operate with higher sympathetic nervous system arousal, meaning the body’s “fight-or-flight” system activates more easily and stays active longer.

This leads to a higher resting heart rate, faster stress responses, and a smaller window of tolerance.

Citation: Kushki et al., Autism Research, 2013 — autistic participants demonstrated significantly elevated sympathetic activity and reduced parasympathetic regulation.

The outdated myth that autistic people “don’t feel pain” has been debunked.

New research shows enhanced pain sensitivity, including amplified responses to physical pain and central sensitization symptoms like chronic fatigue.

Citation: Moore, PAIN, 2020 — autistic adults reported higher pain intensity and increased central sensitization markers.

Learning cannot occur in a dysregulated nervous system — this is true for all humans, but especially for autistic individuals. Studies show that nervous system regulation directly improves attention, executive functioning, and learning capacity.

Increasing the amount of studies that are not focused on the genetic factors in autism-great

Funding research into regression (which should be treated like any other co-occurring condition that affects the autistic community). I’m all for it -it is real and happened to my child-so also great

Inclusion of those underrepresented in studies about autism-also great

but I see an oversight here specifically and will point it out.

Although “profoundly autistic” people are mentioned (I really don’t like the label but that was another series on this page) there is no specific mention of autistic women that I could see (feel free to correct me if I am wrong). I think this should be specifically noted since all women have been historically underrepresented in all medical and prescription drug studies, but especially autistic women. 80% of autistic women are diagnosed after 18 due to the fact that autism presents differently in women and the criteria for autism was built on studies of males.

This looks like it will be an 8 part series where I go over the points I am going to make in my public comment.